Bill Jenkins, a government whistleblower who was trying to end the Tuskegee syphilis study that was using black patients as a guinea pig, then turned to epidemiology and spent decades fighting against racism in health care. 73.
The cause was complications of sarcoidosis, an inflammatory disease, said his wife, Diane Louise Rowley.
Dr. Jenkins was a champion of racial equality and social justice since high school, when he helped register voters to vote in isolated South Carolina. He then worked for the Non-Violent Student Coordinating Committee while studying at the historically black Morehouse College in Atlanta. He has already been arrested for protesting against the white-only policy of an Atlanta-owned restaurant owned by Lester Maddox, the future governor of Georgia.
In 1967, he became one of the first African-Americans recruited into the commanded corps of the United States Public Health Service. Dr. Jenkins said he wanted to be part of a new era of uniform service, at a time when many African Americans understood that "public health" meant preventing "black diseases" to contaminate whites.
He quickly launched an anti-discrimination newsletter called The Drum, which then covered the Ministry of Health, Education and Welfare, and worked as a statistician when a doctor told him about the 39, Tuskegee experience.
Led by the Public Health Service, the study is named after the Macon County Seat in Alaska, where researchers have ostensibly treated 399 poor sharecroppers and black laborers for their "half-breeds" – a catch-all term that really refers to syphilis. deadly sexually transmitted disease.
Acting without the informed consent of the participants, the doctors left the disease untreated while studying its long-term effects, performing painful procedures such as lumbar puncture for purely scientific purposes. While most other Americans found penicillin treatment, which became a routine antibiotic in the 1940s, subjects in Macon County were left to die. Many died as a result of the disease and some survivors became blind or crippled.
The experiment was not conducted in secret. More than a dozen important articles on the study have been published in medical journals, according to Susan M. Reverby, health historian at Wellesley College, although participants were often described simply as "volunteers". In the mid-1960s, a young Detroit physician, Irwin Schatz, read one of these articles and wrote a letter to this study. leaders, urging them to "reassess their moral judgments".
The letter was filed without response. And when Dr. Jenkins told his advisor of his concerns about the study, he was told, "Do not worry about it."
He and several like-minded colleagues wrote an article for The Drum, highlighting their ethical concerns about the study. They also sent Tuskegee articles to several newspapers, including the Washington Post. "We have not been very far with this approach," said Dr. Jenkins in a 2017 interview with the Choice / Less podcast, saying he and his colleagues should have written a press release.
The details of Tuskegee's experience remained little known until 1972, when Peter Buxtun, a former Public Health Service investigator, provided study details to the Associated Press. Originally published in the Washington Star, the article by journalist Jean Heller quickly made headlines across the country. The experiment ended at the end of 1972. At that time, only 74 participants were still alive.
The study was later equated with Nazi medical experiments conducted during the Second World War and was part of what Reverby described as "The Holy Trinity of Bioethics", a series of unethical experiments that included a Brooklyn Hospital. injection of live cancer cells to 22 patients and a school in Staten Island that gave hepatitis to children with intellectual disabilities.
All three cases were credited with the adoption of the National Research Act, which created a commission to identify the principles of basic research and formalized an ethics review process for government-funded studies. federal.
The Tuskegee study turned out to be transformative for Dr. Jenkins, who said he was haunted by the experience and by his inability to end it. Realizing that he needed better training, he returned to graduate school and joined the Centers for Disease Control and Prevention as an epidemiologist, documenting cases of syphilis in all the country. In the mid-1980s, he became interested in AIDS, which disproportionately affects African Americans.
His wife, former CDC epidemiologist and professor of public health at the University of North Carolina at Chapel Hill, said that he had helped to ensure the existence of "special programs". education of African American communities on AIDS and its prevention ".
"He always made sure that the research he was involved in was highly ethical," she added. "He has repeatedly been involved with the CDC to oppose planned studies, trying to make sure that a study was not started or revised to the point that he was not there. she would have a better ethical approach. "
For almost 10 years, Dr. Jenkins has also led Tuskegee's health protection program, under which the government provides medical coverage and a range of health benefits to survivors of the syphilis experience. from Tuskegee and their families. "I try to give them the care I would like to give my mother," he told The New York Times in 1997.
Dr. Jenkins was also part of a group of historians, bioethicists and health professionals known as the Tuskegee Syphilis Study Legacy Committee, which issued a report in 1996 urging President Bill Clinton to apologize for carrying out the study on behalf of the country.
On May 16, 1997, the President made a formal apology to a White House audience of five of the eight surviving participants and the families of the deceased. (The last survivor of the study died in 2004.)
"The US government did something wrong – deep, deep, morally wrong," Clinton said. "It was a scandal for our commitment to integrity and equality for all our citizens. . . . To our African-American citizens, I am sorry that your federal government orchestrated such a clearly racist study. "
William Carter Jenkins was born in Mt. Pleasant, S.C., a suburb of Charleston, on July 26, 1945. His mother was a school teacher and his father owned a funeral home and ran a restaurant.
Dr. Jenkins received a B.Sc. in mathematics from Morehouse in 1967 and a M.Sc. in Biostatistics from Georgetown University in 1974. He also obtained a Master's degree in Public Health in 1977 and a PhD in Epidemiology in 1983 from the University of Michigan. 39, University of North Carolina. .
Dr. Jenkins has spent a large part of his career expanding the ranks of minorities in public health. At Morehouse, where he worked as a teacher, he set up a master's degree program in public health and joined the CDC to create the Imhotep project, a summer internship designed to build the skills of Minority students in public health. It has already been estimated that more than half of African-Americans with doctorates in epidemiology were trained in the program and related activities.
He has also taught epidemiology at the University of North Carolina, participated in the creation of an annual conference on minority health and founded the Society for the Analysis of Problems. Afro-American Public Health, affiliated with the American Public Health Association.
In addition to his wife, with whom he married in 1983, there is a daughter, Danielle Rowley-Jenkins.
When Clinton released Tuskegee's apology in 1997, Dr. Jenkins urged public health officials to consider these remarks as a further step in the fight against racial injustice.
"There is a tendency to believe that African Americans are reluctant to participate in research because of this study and I think it belittles the concerns of African Americans," he told The Times. "They are concerned about public health research because they are alienated from American society in many ways, and this study is spearheading. It's more than just this study and we'll have to do a lot more work than just apologize. "